At Some Point, Don’t We All Feel Like Grizabella, the “Glamour Cat”?

Last night, Tyler and I were fortunate enough to see the West Hollow Middle School’s production of CATS, the broadway musical.  My cousin, Christopher, was performing as Macavity, and what more can I say, except that the entire cast was absolute perfection!

Anyway, you are probably wondering what the point of this blog post is?  Well, CATS, the broadway musical, has always held a special place in my heart.  It was one of the first broadway musicals that I ever went to when it was originally on broadway, and because we knew one of the actors, I was fortunate enough to be taken behind the scenes, and even had my face painted like one of the actors.

The song, Memory, from the musical CATS has also held a special place in my heart.  But, while I sat in the audience last night, I realized that my experience with a chronic illness, such as Lymphedema, left me feeling very much like Grizabella, the “Glamour Cat.”

For those unfamiliar with Grizabella, let me introduce you to her character.  Throughout the play she is portrayed as an elderly cat, weathered by age and life, which has left her nearly unrecognizable to the cat she once was before.  Throughout the play, the other cats are repulsed by Grizabella.  They do not touch or welcome her around, but rather, they shun her.  But, at the end of the play, Grizabella sings the song “Memory,” and is ultimately chosen by Old Deuteronomy to be “reborn.”  It is at this time, that the other cats start to accept, welcome, and embrace her as one of their own.

The lyrics to “Memory,” so profound and devastatingly beautiful, reduced me to tears last night.  I was Grizabella, the “Glamour Cat,” and had been for many years.

Below are the lyrics, and my own interpretation, which I believe my fellow Lymphies can relate to, as well as others suffering from chronic illnesses.

“Midnight not a sound from the pavement
Has the moon lost her memory?
She is smiling alone
In the lamplight
The withered leaves collect at my feet
And the wind begins to moan

Memory all alone in the moonlight
I can smile at the old days
I was beautiful then
I remember
The time I knew what happiness was
Let the memory live again

Every street lamp
Seems to beat a fatalistic warning
Someone mutters at the street lamp gutters
And soon it will be morning

Daylight I must wait for the sunrise
I must think of a new life
And I mustn’t give in
When the dawn comes
Tonight will be a memory too
And a new day will begin

Burnt out ends of smoky days
The stale cold smell of morning
The street lamp dies, another night is over
Another day is dawning

Touch me it’s so easy to leave me
All alone with my memory
Of my days in the sun
If you touch me
You’ll understand what happiness is
Look a new day has begun”

When dealing with a chronic illness, such as Lymphedema, it can leave you feeling “lost” and leave you feeling like you are spiraling out of control.  It can also leave you feeling like you are in the ocean, while the waves crash down, without an anchor in the turbulent storm of life.  It is easy to fall into the rabbit hole with little energy or desire to climb back out.  It becomes easier to say, “What’s the point?”  It becomes easier to succumb to the life you have been unfairly dealt.

In the beginning, I felt just like Grizabella, weathered and aged by my diagnosis despite the fact that I was young and vibrant.  Each day was breaking me down until I did not recognize who I was looking at in the mirror.  Although I pushed everyone away after I was diagnosed, I like Grizabella, secretly longed for someone to touch me, to ground me, and to tell me that Lymphedema had not changed me.  I needed someone to tell me that I was still the same person I was before Lymphedema.  The world kept moving, time kept passing, and people’s lives eventually moved on, with or without me.  I like Grizabella, was trapped with my memories “of my days in the sun,” with only me left to rescue me.

However, although Grizabella was vulnerable, she was also a survivor.  Similarly to Grizabella, I remained hopeful that one day I would accept my diagnosis and thrive despite it.  Deep down, I knew that I could not let Lymphedema win, but rather, I had to fight it both emotionally and physically.  Similarly to Grizabella, I remained hopeful that at some point my diagnosis and the painful days of isolation, emotional fatigue, and physical pain and exhaustion, would be a distant memory, one that would cause me to grow and would shape me into the woman I would later become.  Although I felt broken down and beaten, I remained hopeful a new day would come, and with it, happiness and new memories to accompany my own treasured collection of memories from before Lymphedema.

I believe, in a way, we are all “Grizabella,” yearning and longing for someone to touch us, to feel our pain, and to validate our experiences.  But, as humans, we remain hopeful in the face of adversity.  Hopeful for new research, hopeful for a cure, and hopeful that no matter how dark the days ahead may be, there will always be a new day to come.

Last night, the beautiful lyrics of “Memory” brought me to tears in the audience.  I saw my broken and fragile self in the mirror when looking at Grizabella, but I also saw how far I have come since my diagnosis.  I saw the brave, strong, and hopeful woman sitting in the audience.  I know now that I am the same person I was before I was diagnosed, with more happiness and beautiful memories to last a lifetime, but I also have scars that have molded me into the woman I have become.

One of my best friends was sitting next to me last night in the audience.  At the end of the performance of “Memory,” she leaned over to me and said, “You have been reborn too.”  And, she was absolutely correct, I have been and you can be too.  We are all Grizabella, the “Glamour Cat,” which means we have the ability to remain hopeful, and we all have the ability to thrive despite our chronic illness, and we all have the ability to find happiness once again.

 

 

 

 

 

Radiant, Warm, Abundant Sunshine, or My Own Personal Torture Chamber

Hello everyone! I hope you all had a beautiful weekend, and if you were observing this week or weekend, I also hope you had a wonderful time.

On Sunday, I celebrated Easter with my family.  I knew we were projected to have a beautiful Sunday, with sunshine, warm weather, and clear skies.  But, I suppose I wasn’t completely ready to welcome summer yet.

For Lymphies, sunshine, warm weather, and humidity often mean increased sweating, swelling, discomfort, pain, and limited use of our affected limbs.  For me, personally, it means all of these things.

Yes.  Radiant, warm, and abundant sunshine is also my very own personal torture chamber.  

I woke up Sunday morning and the birds were chirping, my puppy, Benson, was ready to start the day, and I was excited to spend the whole day with my family.  I woke up wearing my Tribute, which for those who don’t know, is an overnight foam compression sleeve.  My friends call it my oven mitt, but to me, it is a perfect pillow fight weapon LOL.

Anyway, I woke up Sunday morning and took off my Tribute, and was excited to see that I could see my wrist bone! It was a good day.  However, I then realized how warm it was in our bedroom.

When we left the house at 9:30 A.M., it was already mid 70s.  I knew immediately that it was going to be a shock to my lymphatic system and an overall tough day, but nonetheless, I was determined to have a great day!

We went and spent time with my mother-in-law in the morning, and then went to my aunt’s house in the afternoon.  Throughout the day, I played ball outside with Benson at least six times, and then spent time outside with family.

From the moment I walked outside, the swelling started.  I wear a black compression sleeve and glove, which some question as black often attracts the heat.  But, to me, black is fashionable, slimming, and makes me feel “less different.”

By early afternoon, my fingers were bulging over the sides of the compression glove.  It was harder for me to bend my fingers and palm.  The elastic band under my armpit was beginning to irritate my skin.  My thumb, itself, had gone numb.  Finally, it became difficult to cut my own food.

As Lymphies, we struggle with the “should I go outside and enjoy what life has to offer, “or should I stay inside where my lymphie limb is safe.”

When I sat down to cut my food, I got frustrated and my eyes welled up with tears.  If this was a few years ago, this moment would have ruined my day and made me spiral into a cocoon of emotion.

Instead, I looked up and saw my beautiful family, including my godson playing with his new toys, my husband conversing with family, my mom sitting with me in understood and compassionate silence, my puppy eating a bully stick, and my 92 year old Nana enjoying a wonderful home-cooked Easter dinner outside of the nursing home.

Life was still beautiful and still enjoyable.  So, I struggled to eat dinner and I allowed myself to be frustrated.  But, then I piled up two pillows and elevated that lymphie arm of mine.  Elevation made the pain easier to manage, and luckily, a quick rain shower dropped the temperature outside, and I was able to sit outside in the late afternoon.

Later that night, I went on Facebook to one of my support groups and realized that I was not the only one having a “lymphie flare-up.”  Wow, did it feel good to know I wasn’t alone.  This is why I began this blog.  For anyone struggling, please know you aren’t alone.

We have our uphill battles to climb with Lymphedema.  In fact, anyone suffering with a chronic illness has those battles to climb.  But, when you climb to the top, the view is beautiful and worth the struggles you have to endure along the way.

For me, the swelling was worth seeing my family smile and laugh, seeing my Nana win the annual egg game, and seeing my puppy exhaust himself playing ball.  It. Was. All. Worth. It.

I hope your weekend was wonderful!  Until next time…xoxo

– Chrissy

The Quicksand of Life

Living with a chronic illness, such as Lymphedema, adds another layer of daily emotional and physical struggles.  If you let it, it can frustrate, trap, infuriate, defeat, drown, and bring you down down to your knees, where each day you are fighting to breathe and fighting to escape it.

In a way, chronic illnesses, such as Lymphedema, remind me of “quicksand.”  I have consistently compared my own diagnosis of Lymphedema to “quicksand.”  According to the Merriam-Webster dictionary, “quicksand” is defined as “something that entraps or frustrates.”  However, ironically, according to a National Geographic News article, “a person moving around in quicksand will never go all the way under.”  After living with a chronic illness for eight years now, I truly believe that similarly to “quicksand,” if people continue to fight against their chronic illness, continue to seek treatment, continue to learn more about their chronic illness, and continue, beyond everything, to succeed in spite of their chronic illness, they, too, “will never go all the way under.”

I did not come to this “lymphie free” mentality overnight.  Nor did I drink the “kool-aid.”  In fact, I am not an overly optimistic and happy person, and I am most certainly not your typical “rah-rah” individual.  Rather, since I was young, I have been compared to Eeyore, a character who will forever be near and dear to my heart.  A series of events, books, songs, and life changes brought me to this “lymphie free” mentality, which I plan on discussing in length in a future blog post.  But, for now, let me share with you my diagnosis, and hopefully you will find some parallels to your own stories, and realize that you are not alone in this great big “chronic illness” world.

Here, we go!  My Lymphedema diagnosis can only truly be explained by a series of unfortunate events, and years of missed or misdiagnoses.  Or, at least, that is how I perceive it!  But, as I am only recently learning, this was just the life that I was intended to have (The Life Intended by Kristin Harmel:  An eye-opening novel which I will hopefully discuss in a future blog post, but highly recommend!).

When I was thirteen, I was hospitalized with a severe cellulitis infection in both hands, my right hand being far worse than my left.  Cellulitis infection, Chrissy?  Sure, easy!  Just go to your doctor or the hospital and they will surely give you the proper medication!  WRONG.

In the beginning, the cellulitis infection reared its ugly head with redness, pain, discomfort, swelling, and small bumps.  Despite it not being a full-blown infection just yet, it nonetheless warranted immediate medical attention.  In a weird twist of unlucky fate, my long-time primary care physician was out-of-town.  My mom, a pediatric nurse, brought me to the covering physician affiliated with North Shore University Hospital.  We waited in the waiting room for easily over an hour, or so I thought (hey I was thirteen!).  Anyway, once in the examination room, Dr. X examined my hands for LESS than five minutes.  Why, thank you Dr. X for generously giving us five minutes of your time!  Dr. X dismissed our concerns that this was a cellulitis infection, but rather, he thought my mom was looking for narcotics.  Anyway, I was sent home and remember that night vividly.

My cousin was sleeping over that night.  We were downstairs eating dinner.  But, at that point, only a few hours after my appointment with Dr. X, things had progressed badly.  I was unable to feed myself and unable to use or bend my hands and fingers.  Tears were silently cascading down my face.  Of course, my cousin probably thought I was a major buzzkill!  Within a few hours, the swelling had become severe, the pain turned into agony, and the blisters had begun to fill with fluid.  Not only was I incapable of feeding myself, but I was unable to open doors and unable to change my clothes.  We tried to watch a movie, relax, and eventually my cousin fell asleep.  But, for me, sleep never came.  My hands felt like they were engulfed in flames and the tears eventually turned to sobs.  Later, I would learn that the blinding burning searing pain was likely nerve damage.  I remember creeping into my mom’s bedroom in the middle of the night and asking her for help.  She immediately took me to the Emergency Room at North Shore University Hospital.  Within minutes, I was admitted to the hospital with morphine and antibiotics prescribed intravenously.  The attending physician questioned my mom and “why she waited so long to bring me in.”  Unfortunately, these questions plague her still today, despite my best efforts to explain that she took me to Dr. X for help and the infection escalated faster than we ever could have imagined.

Little did we know, but that cellulitis infection would severely compromise my lymphatic system.  For those who do not know, the lymphatic system is a part of the circulatory system and is comprised of lymphatic vessels which carry lymph, a clear fluid, towards the heart.

Quickly, to fill you in.  I was a competitive softball pitcher growing up.  I fell in love with the game and never looked back.  After the cellulitis infection, and over the next four years, we noticed small changes in my right hand and arm, including fatigue, minor swelling, decreased pitching speed, and I was experiencing what can only be described as “electrical charges” in my hand.  We went to several different physicians regarding these symptoms, including those physicians at Hospital for Special Surgery who specialized in Sports Medicine.  Obviously, at the time, we thought it might have been sports-related.  After examinations, these doctors also dismissed our concerns.  My mom, being a nurse, inquired as to Lymphedema.  I remember the faces of the doctors looking at us, smiling, chuckling, and then dismissing us.  But, they were doctors, and I chose to believe them.  Everything was okay, right?

After high school, I was recruited to play softball at Lafayette College, a Division 1 program.  During the summer after my freshman year, I underwent right shoulder arthroscopic surgery to stabilize the glenohumeral ligament capsule.  Again, mom took me to the best.  We went to an orthopedic surgeon at Lenox Hill, who also happened to be the lead surgeon for the New York Jets.  Before surgery, my mom mentioned my previous bouts of swelling and asked my surgeon about post-operative complications, including Lymphedema.  He, also, shrugged her off and dismissed her concerns.  The response to me: “Don’t worry Chris, you’ll be on the field in no time and as good as new.”

In the months following my surgery, I experienced swelling that spread from my right arm and hand to my right breast and back.  The swelling would double my arm in size and cause me to have a hump on my right shoulder blade.  At that point, I was receiving aggressive physical therapy aimed at returning me to the field in time for the next season.  The doctors attributed any swelling to my shoulder surgery.  To alleviate the swelling, I underwent massages performed by my physical therapist, which were so painful they reduced me to vomiting.  Again, my mom asked my physical therapist about Lymphedema.  The response: “Relax mom, you worry too much, that is a worst case scenario…Chris will be fine”  I have lost track at this point how many people have dismissed our concerns and told us “not to worry,” despite my mom’s pointed questions about Lymphedema.

When the swelling would not subside, my mom took me to the Children’s Hospital of Philadelphia, which had a Lymphedema clinic.  I was diagnosed in early 2009, six years after my original cellulitis infection.  However, to most Lymphedema patients, six years for a diagnosis is fantastic.

When I was diagnosed, the doctor, again, spent at most ten minutes with us, but this was surely enough time for her to completely alter my world as I knew it.

Have you ever felt your world turn upside down?  Have you ever felt like you were drowning below a layer of ice, with a view of the world above, but no escape from the frozen depths of the water below? Have you ever imagined yourself screaming and pulling your hair out, only to realize you are barely breathing and you have not made a sound.  Have you ever felt so scared of the unknown that you do not know what to do?  Have you ever felt like you were hit by a truck, rolled over in the car several times, and then propelled through the windshield?  

If you have been diagnosed with Lymphedema, or any chronic illness, or life-altering illness, I can imagine you have felt something similar.

I remember the doctor telling me that playing softball, especially pitching, was out of the question.  I remember the doctor telling me running and weight training, as well as carrying items more than ten pounds on my affected limb, were out of the question.  I remember waiting for the valet to bring our car around to the front of the hospital.  I remember the silent drive back from the hospital to my dorm at Lafayette College.  I remember trying not to break down and trying to be strong in front of my mom and later my friends.

Mostly, I remember my world being torn apart in front of my eyes, like the seams being ripped off of a softball, with only me as a bystander observing it happen.  I remember trying to breathe, but feeling an immense pressure in my chest.  I remember the world spinning before me making me nauseous.  I remember locking myself in the closet and crying with abandon.

Over the next few weeks, I found a Lymphedema therapist at a local hospital by my school and I was fitted for those really fancy and stylish things we call compression garments (said no one ever!).  I remember vividly the first day I wore them.  My mom had come to visit, as she did often after my diagnosis, and we went to the local diner.  For those who are unaware, compression garments are fitted tightly around the affected limb, to prevent the progression of Lymphedema, maintain, and push the fluid out of the affected limb.  I wear a compression glove around my hand and compression sleeve.  That day, I remember feeling the compression around my hand and arm suffocating the little life I had left.  It felt like it was suffocating my dreams and passions all at once.  I felt the stares from people at the diner, and later people on campus.  What more could you take from me Lymphedema?  I felt like a fraction of the person I used to be.  I was defeated, discouraged, broken, fragile, worthless, and damaged.  I felt like a mirror fractured into a million tiny pieces, or like Humpty Dumpty after he fell off the wall.  I looked at myself in the mirror, and asked, “who are you and where is Chrissy?”

Now, I know, I was none of those things I felt, but when you are deep in your rabbit hole, it is difficult to see through your own warped emotional state.  Always remember, you are not what this disease makes you think you are.  You are still you, but you may have to remind yourself a few times, and that is okay.

For years, I allowed Lymphedema to consume my life and to steal the little bits of “me” that I felt I had left.  Years later, while seeking counseling to grieve the Lymphedema diagnosis, I was dealt another blow, and diagnosed with Post-Traumatic Stress Disorder, as well as an anxiety disorder.  I have learned that after struggling with a chronic illness- this is normal.

Although I spend a significant amount of time in this blog post discussing my own story, I know that it certainly parallels many stories told by Lymphedema patients.  Lymphedema patients struggle being diagnosed, finding treatment, and even receiving medical coverage through their insurance companies.  Recently, I met a woman who waited thirty years for a proper Lymphedema diagnosis.  Through Facebook, I have heard countless stories from fellow lymphies who waited over twenty years to be diagnosed.  The lack of awareness surrounding Lymphedema in the medical community, as well as within our own communities, is astounding.

As I discussed at the start of this blog post, Lymphedema, and other chronic illnesses, can certainly feel like “quicksand.”  You may feel trapped with no way out.  I can tell you, that the “quicksand” moments become less frequent over time, but every now and then, they come, and they come in full force.  When that time comes, see it for what it is, and then keep moving, because as we now know, a person moving will never completely be pulled under in quicksand.  And, despite its best efforts, Lymphedema will not pull you completely under either so long as you do not allow it that power.

What those doctors did not know about me: “Momma did not raise no quitter.”  I was determined to make it back to the field, and I did.  And, only recently, I became determined to take back my life and claim it back from Lymphedema, and I did, but that my friends is for a future blog post.

I hope you can read this post and know you are not alone.  My mission is to raise awareness for this incurable and debilitating disease. In future blog posts, I hope to take you through my emotional and physical journey, and my daily struggles and triumphs, and hopefully in some way, with or without Lymphedema, you can relate.

Remember, don’t let the quicksand consume you.  Allow yourself those moments to cry, grieve, and stamp your feet, but keep fighting back, against all odds, because you deserve to find a way to live your life “lymphie free” too.

Beginning to Live Lymphie Free

Hi everyone!  My name is Chrissy and I was diagnosed with secondary Lymphedema in 2009.

Eight years.  It took eight years for me to grieve the diagnosis.  It took eight years to work through the five stages of grief several times.  It took eight long years to accept “my new lymphie life,” and to start living, again, lymphie free. Finally, it took eight years for me to find my voice, and to rediscover the girl I left behind when I was diagnosed.

There is no secret to living “lymphie free.”  And I, in no way, have it figured out completely yet.  I have my good days and I have my bad days, which would break me completely if I allowed them to.  But, I think the term “lymphie free,” allows me to see the world in a different way.  It is a world where I do not allow Lymphedema to define me, and where I do not allow Lymphedema to control my life any longer.  It does not mean that I do not have symptoms, nor does it mean that I “pretend” I no longer have Lymphedema.  It is a mental state that I try to focus on to believe that I can live a full and empowering life despite my Lymphedema diagnosis.

I love to read and I love to write.  I have always found writing to be cathartic. I hope this blog can serve as a safe haven and resource for my fellow lymphies, and as a means to raise awareness for this disease.  Who knows, maybe no one will read it.  But, if one person finds this blog helpful, or learns a little more about Lymphedema, then I have done my job as a patient advocate.

I hope you will follow this blog and share your own stories and advice for others as well.

Live your life “lymphie free” and have no regrets.